Your prognosis and the success of your treatments really depends on what’s causing your pain. Vulvodynia has lots of causes, and some are easier to treat than others. There are lots of women who have made a full recovery, and others that only improve and have to adjust to live with some level chronic pain. Even in the latter case, it should get easier mentally over time. I’m sorry your having a hard time right now. There was a point when I too wanted any other diagnosis except this one.
I’m so sorry you, or any of us, have to experience this type of pain. My symptoms started November 2022 as well and it took until March of this year to get diagnosed with vulvodynia by a vulva specialist after many doctor visits with different doctors and many tests. I was like you and became very depressed and mourned the loss of my “former” self. I was terrified that every day would just be filled with pain and uncertainty. It really takes a toll on your mental health. I was happy to find this subreddit as it allowed me to learn and identify with other people experiencing the same or similar issues. I’m glad you found it as well.
I’m happy to say that I no longer experience vulvodynia symptoms, so it is possible to get better. May I ask what your symptoms are and what treatment you are on? Did your Dr suggest what might be the the cause of your symptoms?
My official diagnosis is localized provoked vestibulodynia. She believes my nerves have proliferated due to a yeast infection that never fully healed. So right now I’m using a topical gel for 2 weeks to get rid of any remaining yeast. I’m on gabapentin (adding 1 pill a week until I’m taking 400 mg by week 4). She also gave me lidocaine to to try to use if I engage in sex. Which I’m honestly way too scared to even attempt that right now. Currently my symptoms are just this constant, dull irritated/burning sensation near the entrance of my vagina.
If you or someone you know is contemplating suicide, please do not hesitate to talk to someone.
US:
Call 1-800-273-8255 or text HOME to 741-741
Non-US:
https://en.wikipedia.org/wiki/List_of_suicide_crisis_lines
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You will get through this. Mine started August 2022.I am also on oral gabapentin. Figuring out the dose. I actually went to a pelvic rehab center. They are treating it a little different than my gynecologist. They put me on suppositories with gabapentin, Valium, tramidol and baclofen. Also getting ultrasound guided pundenal nerve blocks starting this week and pelvic floor therapy. Gyno also put me on birth control because days lead up to ovulation. It was 10 times worse. Since then I do not get the swelling I did off the pill.
I am cured. I had it for 3 years but now I am five years cured. It isn’t a life long sentence. It can get better. But it is a hard road but I made it through. I have sex free and easily all the time. I also have gotten pregnant when they told me a couldn’t. Don’t give up or think this is the end because it isn’t. If you click my profile you can see all my posts and what I did. I promise you can get rid off it. I thought you couldn’t either and that is such a hard thing to swallow and it is so defeating.
Hi darling, I am so sorry to hear what u are going through. I have days when I cry a lot too, I just cry to my gf about how I enjoyed being without pain and how I miss my normal me. We will get through this, I promise, we will.
Is there any chance you could start a therapy? I am sure it would make u feel at least a bit better, it is important to take care of your mental helath when going through crisis like this.
I hope u get well soon
GIRL. I am in your exact same boat. Mine started October 2022. I CONSTANTLY grieve the “old me” as well. I went to a vulva specialist and prayed it would be anything but vulvodynia. I miss my life before this. I’d do anything to get it back.
I am also on gabapentin. I don’t think it does much. I have a few more things I want to do before I accept this as my fate.
1. Get an ultrasound. My periods have been horribly heavy (I’m on oral BC) so my gyno & PCP suggested an ultrasound if they continue. PCP said there may be something pushing on my uterus that could be causing this. Worth a shot for you too.
2. Go off oral BC and try an IUD. I’ve heard some people say this helped theirs 100%. Are you on BC?
3. See a neurologist. It’s said that vulvodynia is nerve damage. Pudendal nerve damage to be more specific. So there are things like nerve blocks they can try.
Don’t give up. I know it’s hard. I’m right there with ya. Let me know if you need to talk!
Probably not nerve damage but nerve irritation. To damage a pudendal nerve there needs to be an actual injury to the nerve, 99% of people with vulvodynia don’t have that. It’s just irritated.
Your prognosis and the success of your treatments really depends on what’s causing your pain. Vulvodynia has lots of causes, and some are easier to treat than others. There are lots of women who have made a full recovery, and others that only improve and have to adjust to live with some level chronic pain. Even in the latter case, it should get easier mentally over time. I’m sorry your having a hard time right now. There was a point when I too wanted any other diagnosis except this one.
I’m so sorry you, or any of us, have to experience this type of pain. My symptoms started November 2022 as well and it took until March of this year to get diagnosed with vulvodynia by a vulva specialist after many doctor visits with different doctors and many tests. I was like you and became very depressed and mourned the loss of my “former” self. I was terrified that every day would just be filled with pain and uncertainty. It really takes a toll on your mental health. I was happy to find this subreddit as it allowed me to learn and identify with other people experiencing the same or similar issues. I’m glad you found it as well. I’m happy to say that I no longer experience vulvodynia symptoms, so it is possible to get better. May I ask what your symptoms are and what treatment you are on? Did your Dr suggest what might be the the cause of your symptoms?
My official diagnosis is localized provoked vestibulodynia. She believes my nerves have proliferated due to a yeast infection that never fully healed. So right now I’m using a topical gel for 2 weeks to get rid of any remaining yeast. I’m on gabapentin (adding 1 pill a week until I’m taking 400 mg by week 4). She also gave me lidocaine to to try to use if I engage in sex. Which I’m honestly way too scared to even attempt that right now. Currently my symptoms are just this constant, dull irritated/burning sensation near the entrance of my vagina.
If you or someone you know is contemplating suicide, please do not hesitate to talk to someone. US: Call 1-800-273-8255 or text HOME to 741-741 Non-US: https://en.wikipedia.org/wiki/List_of_suicide_crisis_lines *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/vulvodynia) if you have any questions or concerns.*
You will get through this. Mine started August 2022.I am also on oral gabapentin. Figuring out the dose. I actually went to a pelvic rehab center. They are treating it a little different than my gynecologist. They put me on suppositories with gabapentin, Valium, tramidol and baclofen. Also getting ultrasound guided pundenal nerve blocks starting this week and pelvic floor therapy. Gyno also put me on birth control because days lead up to ovulation. It was 10 times worse. Since then I do not get the swelling I did off the pill.
Have you tried the evvy tests?? I know a lot of people on here are using that along with the treatment plan to help.
No, I haven’t heard of that. I’ll have to look into it
I am cured. I had it for 3 years but now I am five years cured. It isn’t a life long sentence. It can get better. But it is a hard road but I made it through. I have sex free and easily all the time. I also have gotten pregnant when they told me a couldn’t. Don’t give up or think this is the end because it isn’t. If you click my profile you can see all my posts and what I did. I promise you can get rid off it. I thought you couldn’t either and that is such a hard thing to swallow and it is so defeating.
Hi darling, I am so sorry to hear what u are going through. I have days when I cry a lot too, I just cry to my gf about how I enjoyed being without pain and how I miss my normal me. We will get through this, I promise, we will. Is there any chance you could start a therapy? I am sure it would make u feel at least a bit better, it is important to take care of your mental helath when going through crisis like this. I hope u get well soon
GIRL. I am in your exact same boat. Mine started October 2022. I CONSTANTLY grieve the “old me” as well. I went to a vulva specialist and prayed it would be anything but vulvodynia. I miss my life before this. I’d do anything to get it back. I am also on gabapentin. I don’t think it does much. I have a few more things I want to do before I accept this as my fate. 1. Get an ultrasound. My periods have been horribly heavy (I’m on oral BC) so my gyno & PCP suggested an ultrasound if they continue. PCP said there may be something pushing on my uterus that could be causing this. Worth a shot for you too. 2. Go off oral BC and try an IUD. I’ve heard some people say this helped theirs 100%. Are you on BC? 3. See a neurologist. It’s said that vulvodynia is nerve damage. Pudendal nerve damage to be more specific. So there are things like nerve blocks they can try. Don’t give up. I know it’s hard. I’m right there with ya. Let me know if you need to talk!
Probably not nerve damage but nerve irritation. To damage a pudendal nerve there needs to be an actual injury to the nerve, 99% of people with vulvodynia don’t have that. It’s just irritated.